If you are new to PFFD - I recommend starting with the PFFD book

Come chat with limb lengthening doctors about CFD/PFFD

Just a reminder that Dr. Standard (and frequently Dr. Herzenberg as well) will be hosting an online chat on congenital limb differences. This includes conditions such as CFD, fibular hemimelia and a few others. Date Thursday Jan 20; time 8 PM EST.

If all of this is new to you, or if you have questions, please join us. If you have emailable x-rays, the doctors can review them during the chat.

Nash's Story

Hi! My name is Caroline. My husband Chris and I live in Iowa. Our son, Nash, is 5 months old and is an amazing little guy. We are so in love with him!! Nash has CFD of his right leg and we were first informed of his leg at our 20 week ultrasound. It was a scary and confusing diagnosis. Mostly because NO ONE knew anything about CFD or PFFD. We immediately went online and found some information. Dr Paley's website was very informative, which was so nice since this condition is so rare and there's not much out there.

Pain issues?

I am a 36 year old BPFFD woman. I have not had any lenghtening or surgery's and have full function of both my legs. However, over the years I have aquired a list of "issues" mainly pain. I have been all over (so it seems) for back and hip problems. The biggest problem is no one seems to know what to do for my "hip" pain. A prosthetic is not an option, as I do not have an actual hip or knee joint. This is just a nutshell of what's been going on. I am wondering if any other adults with BPFFD have suffered or are suffering from any sort of pain issues. I look forward to hearing from people.

Surgery

My daughter will have to have another surgery this year to fuse her knee to the bones in her lower leg and try to stablize her hip. I am just wondering if anyone else has had this done and if it has helped. I do not want to put her through the surgery if it is not going to help. She is 5 so it will be different than when she was 15 months and had surgery. I would appreciate any advice you all can offer.

Our Christmas Baby.

Hello to all, Happy New Year. I hope you all had a lovely Christmas.
My wife Alex gave birth to a beautiful baby girl on Christmas Day night. Caitlin Eve Bailey was born at 10.11pm, weighing 7lb 5oz. We could not be happier, she is just perfect. We brought Caitlin home on 27th December and mother and baby are doing just great. I can't take the smile off my face. I look forward to the rest of this new year with the two most important things in my life, Caitlin and Alex.

Proud new Daddy,
Dave Bailey

confused

Hello,

I'm the mom of a 16 month old little boy who was born with PFFD in both legs. The doc here in Ohio told me to just wait and see what happens, while Dr. Paley in West Palm Beach, FL told me he could straighten out his hips and ankles, but told me he couldn't lengthen his legs. I'm afraid to go through with surgery...anyone worked with Dr. Paley? If so what was the outcome?

Thanks,

Amy

CFD/PFFD chat this THursday, December 9

8 PM EST on Thursday Dec 9.
Your chance to ask questions/opinions of one (and usually two) very experienced limb lengthening surgeons and other families.

For more info, refer to previous posts or email : icll (at) lifebridgehealth.org

(Note this is not strictly CFD; the talk also covers fibular hemimelia and radial club hand).

Lee

MY JOURNEY WITH PFFD

My name is mwazhi my parents found out that i was diagnosed with PFFD at the age of one year ,eight months.They did not know much about it in fact they were told i a had a short hip disease.
My growing up was stressful and challenging i faced rejection from people around me including some of my close relations.My mother was my source of encouragement she motivated me to go out there and be me.She taught me the importance of self acceptance an self confidence,with that the people around me accepted me as i am.

my PRInce

My son Kaheim was a normal baby until he started to walk we notice he Limps after Taking him to the doctor we were told he has pffd iam not even sure what type it is because the doc was telling US about an OPeration to correct it and it would have to be repeated about every 3 to 4 years and it's a possibility of AN infection and then amputation is a must his right leg is 3.8 cm shorter than the left he's only 2yrs old please help me I Live in Jamaica

what to expect after super hip super knee surgery

Our five year old will be having her first surgery this upcoming January. We weren't expecting it until much later. In fact the last doctor she was seeing took a "wait and see" approach and didn't recommend it until she was ten years old. We just met with a new orthopedic surgeon who is familiar with her condition. He recommended the super hip/knee in January followed by a lengthening at about age six.

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